Exploring the potential of civic engagement to strengthen mental health systems in Indonesia.

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Psychosis is ranked 11th among the top 25 causes of disability worldwide, and has serious personal and financial consequences for individuals, their families and the economy, including reduced life expectancy, social exclusion, poor quality of life, and poor health amongst caregivers. In Indonesia, mental health systems are struggling to meet the needs of people with psychosis; more than 90% of people with mental illness do not get any treatment and Indonesia has the highest rate of years of life lost to disability or early death from Schizophrenia than any other country in the world. This, combined with low health literacy (poor knowledge of mental health) and high levels of stigma within the general population has resulted in tens of thousands of people of people being illegally chained up ('pasung') in the family home.Civic engagement, a core part of the WHO global health strategy, could help address these challenges. The benefits of civic engagement have been demonstrated across the world, and include improved access to, and quality of care, reduced stigma, better outcomes for service users and reduced costs. In a health systems context, civic engagement is a 'bottom-up' approach in which service users and their families become actively involved in the design and delivery of health services. It recognises 'lived experience' as an important and valuable form of expert knowledge, and so strengthens health systems by using it alongside clinical or scientific expertise in decision-making, leading to the development of people-centred services. As a rapidly developing middle income country, Indonesia's mental health system is expanding. This early stage of development presents a unique opportunity for civic engagement to shape and strengthen these emerging systems, and ensure they are designed around the needs and preferences of the people they aim to serve. However, our understanding of the pathways through which civic engagement might operate in Indonesia is limited. Our study aims to address these gaps in knowledge and develop a systems level, culturally appropriate civic engagement framework to strengthen local mental health services. People with psychosis and their carers will receive training in research methods and will be involved in all stages of the project.The study will take place at two research sites (Jakarta and Bogor), which represent different health systems and urban/rural contexts. It will be implemented in four phases; Phase 1, a systematic review of research studies, will identify the range of approaches to civic engagement implemented in South East Asia, and review current evidence around the use of these approaches. Phase 2 will be a social network analysis to map the main sources of collaboration and evidence used by stakeholders when making decisions in mental health services and will identify opportunities for civic engagement. In phase 3 we will conduct interviews with key stakeholders across the health system, including, policy makers, clinicians, service users and carers, to explore their views of civic engagement and how it might work for people in Indonesia. In Phase 4 we will hold a series of synthesis workshops with local stakeholders to present our findings and co-produce a testable, culturally appropriate civic engagement framework and implementation strategy. We will also identify key questions/topic areas for a larger evaluation of this approach. During these workshops film and video-interviews will be used to capture important and impactful thoughts and messages amongst stakeholders. Our project will increase potential for civic engagement in Indonesia. It will build research capacity, and provide opportunities for more 'user focussed' research. We will develop a grant application for a rigorous evaluation of the civic engagement strategy we develop, and a strong Indonesian research group, with the knowledge, skills and experience required to lead such a study in the future.